HAIDYN FOWLER

What it felt like when we learned our child has Sanfilippo Syndrome…

We were absolutely heart broken, to say the least.

I think we will always feel a heaviness in our hearts for Haidyn and the other Sanfilippo families.

The idea of all of the hopes and dreams that you have as a parent, for your child, going out the window are devastating. To know that your child has no cure for this degenerative disease is even more soul crushing.

We will continue to grieve this diagnosis but we will also continue to shine light on every day that God continues to allow us to have Haidyn in our lives. She is our light and the reason we are better humans with each passing day.

What our child loves the most is …

She enjoys playing peekaboo and being surprised – as she will hysterically laugh until she gets the hiccups.

She is a daddy’s girl and her mama’s biggest fan. Her big sister can make her laugh harder than anyone and she adores all of her dogs.

She also finds so much joy in spending time with both sets of grandparents and being spoiled rotten by them.

She may not understand everything, but we are pretty positive that she knows she can get away with just about anything while with her grandparents.

Haidyn loves the sunshine, riding the ranger on our property, going for walks, and swinging on her play set in the backyard.

How has Sanfilippo affected our child?

Sanfilippo has continued to rob our child of abilities and skills that she once had.

Her speech is very minimal and at 5 years of age she is mentally about the age of an 18 month old. She never mastered potty training and most likely will not.

Many outings and fun family activities for most can be extremely hard for her to understand or may even be overwhelming.

Medically, Haidyn has a long list of health issues and diagnoses that fall into place with Sanfilippo Syndrome and continue to make her little life harder than it has to be.

How has Sanfilippo affected our entire family?

The hardest part for us, as a family, is the heart break. Our hearts break even more watching our closest family and friends as their hearts break with us.

We are forever thankful that Haidyn is surrounded by so much love, but it hurts to see the others hurt with you.

We are all adjusting to this diagnosis and doing our best to love and lean on each other while focusing on giving Haidyn the very best quality of life, experiences and memories.

Our main focus is to make sure Haidyn always knows just how deeply she is loved.

The hardest part of being a Sanfilippo parent is …

Acceptance and understanding are the hardest part. Not only within ourselves, but from others.

Sanfilippo is so rare and hardly anyone knows of this disease. We as parents, are now educating not only doctors, but the world about our child’s rare disease.

Have empathy for others around you and that you pass in public. You never know what another person is dealing with in their own personal lives. Just a smile could lift their spirits in more ways than you know.

The biggest misconception people have about being a Sanfilippo parent is …

People continue to tell us how strong we are or how they could not imagine being in our shoes. We could never have imagined being here either – but we are here and this is our reality.

We are not always strong and brave. Fear wins some days.

The misconception of being “strong,” is that we didn’t have a choice. Sitting around and sulking because our child has a terminal illness will never benefit anyone and most importantly, her.

Our only option is to fight hard, love hard and raise awareness for our baby girl on even the hardest days.

If we could tell people just one thing about Sanfilippo Syndrome, it would be …

Follow your intuition as a parent and as a human in general. Your heart and your brain can be persuaded but your gut cannot. Our intuition as parent’s led us here even when other didn’t see this disease. It is rare, but there are many rare diseases throughout the world. Spread awareness for the ones that need it most and if you are fortunate enough to have no impact of rare disease in your life, be thankful.

If we could ask just one thing from the world/people, it would be …

Have empathy for others. Sometimes, the hardest people to love or understand, need it the most. Never take even the smallest of things in your life, for granted because I promise you will miss them once they are gone.

Why are we asking you to donate to Cure Sanfilippo Foundation?

We ask that you donate to Cure Sanfilippo Foundation to help raise funds and awareness for clinical trials, treatments and the potential for a cure.

Without your help, Haidyn, and others like her won’t have a chance at beating this ugly disease. We appreciate every single donation, no matter how small.

Our Latest News

We are currently in quarantine to protect our Haidyn and others like her through the COVID19 pandemic. We are embracing and enjoying our quality time as a family before the busyness of every day life returns.